Tag Archives: false hope

TODAY IS ME AWARENESS DAY

Jennie uses her inability to dance as a metaphor – the entire post (and her blog in general) is always worth reading.

This excerpt chilled me, because we’ve been TOLD, by the NIH (National Institutes for Health) and its director who has been ignoring us for decades, Dr. Francis Collins, that we’ve getting DOUBLE the research money this year that we had last year:

If you see ME, you are watching a disaster advancing before your eyes. It’s not a disaster because the powers that be are simply unaware of it; they know. And it’s not a disaster because ME is a difficult disease to unravel. After all, cancer is a difficult disease to unravel. What can we do about complicated problems? We invest the resources needed to solve them.

ME is an unsolved mystery because the biomedical research enterprise has consistently refused to invest the funding and expertise needed to figure it out.

NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% of the need in 2016 to .07% of the need in 2017. In other words, double of practically nothing is still practically nothing.

Dancing is a human right

No one should stop you from moving except yourself (and we all had that desire to move as small children, so ask where it went, if it’s gone).

Moving freely in your body, with energy, is a human right (and we’d be attached to rocks if we didn’t have it). Except I can’t any more, and haven’t had that energy in a long time.

I gave my remaining love of dance to my character, Kary, in Pride’s Children, because I know what it is to dance for a short while in my kitchen – something I lost years ago to both the ME/CFS and my back problems – and miss daily.

The end of Chapter 16 in Pride’s Children: PURGATORY (Andrew comes back unexpectedly to pick up a script):

I kind of like this one.

I REALLY miss dancing.

Shall we dance?

Remember, my royalties for May go to the fight against ignorance and lack of research.

Thanks again to Stencil, for giving me the free image (the words are mine) of a little girl dancing on the beach. It was perfect.

EXPERIENCE MANY LIVES VICARIOUSLY – BY READING

Let’s start somewhere

NOTE: None of what I’m about to say is meant to ask for help or pity, and certainly not for special privileges. Just understanding. JUST. And, among those whose lives isn’t constrained, both happiness for what they have, and a little of that empathy for those who don’t have it.

Even though political events have made this development more urgent, I’m not going there: better writers than I are doing that right now.

I’m discussing the part of empathy associated with illness, chronic illness

When friends seem surprised that I’m still sick, I want to respond as a character in my novel, Pride’s Children: PURGATORY does:

“Has the word ‘chronic’ been marked in dictionaries as ‘Archaic’?”

They don’t ask this question of people who have ‘real’ illnesses such as Lupus or MS or Rheumatoid Arthritis, do they? If someone now lives with HIV, friends usually understand that there is no cure, and remission is bought by a DAILY regimen of pills under a doctor’s care.

They understand that many mental illnesses are chronic, and also managed with a drug regime – every TV viewer has seen the TV writer’s trope: a violent person who is turns out is to be pitied because he has a mental illness, and is ‘off his meds.’

Invisible illness – can’t see it, must be fake

But if you have one of the invisible illnesses, ME/CFS or FM or Gulf War Syndrome, that are not understood because they have been disbelieved by medical ‘professionals’ in general, you are expected to have made a miraculous and convenient recovery using supplements, alternative medicine, acupuncture, specialists, exercise, diet, or yoga, and are now back to full health because, the groups’ sick in-joke, “You don’t look sick.”

‘Chronic’ thus means ‘inconvenient’ to those inquiring, “Are you still sick?”

It doesn’t mean, ‘needs continuing care for symptoms that wax and wane and never go away.’ It doesn’t mean, to the friends, ‘let’s not forget her because she doesn’t have the energy to make new friends.’

And it doesn’t mean, ‘Advocate for her, because she doesn’t have the energy to do it for herself.’

Then something happens to THEM

And it is too late; they get a crash course in empathy – or not.

Until the ill one is their child, their spouse, or their parent or grandparent, and they have to provide or arrange for whatever care is necessary, ‘chronic’ is just plain inconvenient, unless it is also ‘malingering,’ ‘gold-bricking,’ ‘laziness (she’d get better if she just got out and exercised),’ or ‘playing the system so she doesn’t have to work.’

And then, unfortunately, once they understand, they are too busy to be useful – because they are taking care of said loved one, and the now know how much energy it takes to do that, and have little left for the advocacy that is so desperately needed. Catch-22.

Which brings me to the point of this essay:

There have to be other ways of developing empathy than suffering chronic illnesses in your own flesh.

One of the best – and highly underutilized – is fiction.

But not the special books for children – barely disguised non-fiction

‘Little Tommy has Cancer’ or ‘What Does Ostomy Mean’ or ‘You have diabetes – now what?’ – designed, usually, to help the child, school, teacher, or close friend understand what is going on with the child.

Not usually meant for the world in general, such a book might have a cover picture of a kid in a wheelchair, or with an oxygen supply device, or getting a shot. These books are necessary for the ‘different’ ones, the same as the Barbie with crutches is meant for the different child to see herself (as both handicapped AND held to impossible fashion standards).

They are less frequently bought for the kids who don’t have the disability, disease, or impairment – but are there in the library if necessary. These aren’t the fiction I mean, because they’re barely fiction.

Nor books (or movies) intended to promote suicide as noble

Those are just disgusting: if someone becomes broken their best option is to find a way to tidy themselves out of this world so as not to inconvenience their ‘loved ones.’

Ask any real family affected by suicide whether they feel loved by it.

Million Dollar Baby, The Ocean Within, Me Before You – it has become a trope.

I reserve judgment in the case of ‘intractable pain or depression’ – and I could not possibly judge the person who chooses this exit if it is truly intractable – though I often hope it means they have been unsuccessful at finding help. It is not a matter for fiction, because fiction always conveniently leaves out the real details. Horribly depressed and wracked by pain people can and do have ‘quality of life’ in many cases – when their need to stay alive for those same loved ones is their prime imperative. YMMV.

Alternate preventive empathy development made easy via REAL FICTION

In Real Fiction (TM) of the empathy-developing variety, characters happen to also have a disability, illness, or difference – but it isn’t the focus of the story, while always being there.

Real fiction offers the reader a way to understand without being personally overwhelmed.

The writer can go into the thoughts of the character to show inner strength balancing outer pain.

The reader is thus safe to explore the consequences and conditions set up by the writer, to understand more, to literally be a voyeur – or in modern parlance to inhabit a virtual reality – that allows the reader to experience the life of a disabled person from the inside.

This alternate reality is temporary, and can be left or abandoned if it becomes too much for the reader to bear.

Fiction allows the small details that are important to the character to emerge, rather than be lectured about.

A great example is the book (and movie) Ordinary People, by Judith Guest. A family tries to understand why their son attempted suicide – and the family dynamics digs down into the real cause.

Pride’s Children is designed to be REAL FICTION

One of the main characters is a former physician who has CFS (ME/CFS), and is no longer able to practice medicine (which requires energy and brainpower), but has retrained herself as a novelist.

The story shows the development of her change in the area of personal worthiness for her goals, triggered by an accidental meeting with a charismatic actor which then affects her whole life.

Is she correct in the assumptions she’s taken on as to her own value as a PWC (a person with CFS)? Will chronic illness limit the rest of her life? Can she hope for and desire what ‘normal’ people are allowed by society to want?

At least you don’t have to get sick to find out. You will just have to read.

MEDICAL RESEARCH STILL HASN’T ‘SOLVED’ CHRONIC FATIGUE SYNDROME

Whatever they call it, CFS, ME, ME/CFS, CFIDS, SEID… they still have no answers I can believe. I can’t go to a doctor in my state (NJ), get tests which determine what I have and how severe it is, get a prescription for medicine which helps my symptoms (brain fog, pain, post-exertional collapse, swollen lymph glands, and perpetual exhaustion, among other things), and have a doctor titrate the right doses so I get better.

Or, heavens, get cured.

Grasping at the available straws

Vitamin B1 in megadoses (plus Celebrex, a cox-2 inhibitor used mostly by arthritis patients – which helps with pain) is the ONLY thing that has helped of the many things I’ve tried in 25, almost 26 years of having the disease half of all doctors (including my primary) still believe either doesn’t exist or is all in my head.

I’ve gotten used to that state of being – I can’t change it myself – and I refuse to let it take the rest of my life away from me.

For all the posts I’ve written about this over the last couple of years, type ‘B1’ into my search box. There you will find out where I got this idea, why it seems relatively safe, and how I’ve experimented with it.

How much is a megadose – and what do I actually take now?

I’ve been meaning to update the B1 information for a while, because the B1 posts (type B1 into the search box) are some of my most popular, but I was hoping to have a better report.

I tried a couple of things which I will discuss after reviewing my ‘protocol,’ but they didn’t work for me, so I have little new to report – except that I tried them and what they were.

I AM TRYING TO FINISH A BOOK – PRIDE’s CHILDREN, Book 1 is almost ready to publish – and moving slowly and relentlessly in that direction, but that’s why there haven’t been many blog posts.

And, curiously, I don’t seem to have much to blog about, except when, in the process of getting Pride’s Children, Book 1, ready to go up on Amazon, I run into a wall, and have to figure out how to get through it. AND haven’t seen anyone else solve that particular problem for me in a way I can use.

I seem not to think in blog-size chunks when buried in the minutiae of chasing plot holes and typos.

But I’ve wanted to do this update since I did the failed experiments.

Anyhoo…

Vitamin B1 Protocol I use (self-invented):

Why the change in benfotiamine? Because my original pills, which came from Source Naturals, had a bad batch, and the pills (150 mg.) would crumble when I set out my five doses for the day, something which hadn’t happened before.

We went around with the company who sold them to me, and they replaced them with another set of bottles – from the same batch, and with the same problem – so that was that. I can’t be without it (I think – I haven’t tried), and I can’t in clear conscience take pills that crumble into dust.

EVEN though the capsules may have the exact same dust – they were MEANT to be capsules.

I have that as a reason – your mileage may vary. For the year and a half before that, the Source Naturals were fine – and they probably will be again. I may try them again, but right now I need at least the illusion of consistency – I’m trying to finish a book!

So how do I take my doses? Note change:

On the basis of learning that the B1 is supposed to be a co-enzyme for the metabolism of carbohydrate (of which I eat as little as possible), I take one ‘dose’ with each meal or snack.

That’s it – simple.

I often find, at the end of the day, that I’ve omitted one or two doses – the brain forgot. I don’t notice enough of a difference to know it there is one – but then the thing that does the noticing is the same brain that doesn’t work.

The REST of the Protocol:

I’m taking 3-5 naps a day. Again.(See below on what I tried to get around that.)

Some of those naps I spend doing breathing and gentle exercises, stretches, and isometrics. Other times I crash into a deep sleep. It depends on many things, including whether I got a good night’s sleep, and whether I’ve been fighting to put the nap off as long as possible. The brain fog doesn’t help.

My naps are 35 min. with a timer. Except that sometimes I go a lot longer. I let myself sleep if I need it – nighttime sleep is erratic, but doesn’t seem to depend on how many naps I take, or how long they are. So I just listen to my body if I can.

Failed experiment #1: STIMULANTS

Long story, but I was getting useful effects from taking half a Bronkaid tablet (ephedrine as a bronco-dilator, OTC). I would take only a nap or two, and even thought my peak brain efficiency didn’t seem appreciably higher, I seemed to be in my best state for longer every day.

That was good – and I loved it, and I used the extra good time to make writing progress a bit faster.

The bad part was that 1) my blood pressure started rising, and 2) the muscle pains got horrific – razor blades embedded in my flesh.

After some internet searching, I found that the first effect was not uncommon in older people like me.

And the other one ditto – except that some people suggested drinking more water, and I tried that – but ultimately it didn’t work.

Horrific pain was the killer – I stopped taking the Bronkaid that way (off label – do not use unless you are prepared to accept the consequences, or don’t get them). I could NOT get rid of the pain, and spent a lot of time doing stretches, yoga, etc., and was taking way to many extra pain pills.

But it DID work, and I miss its effect. It was nice to be a bit more coherent, take fewer naps, and get more done.

Failed experiment #1: MANGANESE

Portkelly, who commented on one of my early B1 posts, mentioned that he takes 10 mg. of manganese with the B1 – I think every time.

THIS IS WAY TOO MUCH FOR ME.

APPARENTLY, if your system doesn’t process the manganese (source: the internet), and if you are older this cn happen, it ACCUMULATES – and again raises your blood pressure.

This getting old is not for sissies – when I tried adding the manganese, just 10 mg. a day (not a dose), MY blood pressure started rising.

As soon as I noticed it, I cut out the Mn – BP dropped in a week or so to normal.

So now I add ONE 10 mg. capsule to my pills ONCE a WEEK, so I have a small amount available (think I), but don’t have the BP effect.

NO RECOMMENDATIONS TO ADD TO THE B1

I am NOT recommending either of these experiments. I am reporting on them.

I realize I am in the older demographic – and probably have compromised everything, and so get the side effects.

But I cannot, in due conscience, recommend anything I’m not using, and that actually caused me problems.

Maybe somebody younger will be luckier.

Will I keep taking B1? YES – daily

The B1 has not had any side effects, and I still think it give me that remaining one daily period in midday where I can actually think and write.

When I’m finished with this book, I may try again to see if the effect goes away if I stop taking the B1 ‘doses’ up to 5 times a day, but right now it’s in the category of superstitious behavior needed to get me through to publication, and I’ve done al the experimenting I’m going to do for the foreseeable future – I can’t afford the side effects of my failed experiments.

So, yes, I’m taking it.

Is it working for me?

In general, comparing to before, I think it helps 15-20% part of the time.

But I also realize I’m a more mature writer, and have made the effort to be professional about it, getting to that chair every day to write.

I may be fooling myself, but it’s not as if anyone has come up with anything else that I can be sure works.

Be careful with all this stuff – pray for SOMEONE to figure this disease out. If we had medicines that worked for pain, brain fog, post-exertional collapse, swollen lymph glands, exhaustion – and all the rest of our symptoms – we wouldn’t be looking for anecdotes.

GAY LYON – ANSWERING A CFS SURVEY HAS A COST

This week I once again answered one of those surveys asking “What would you do if tomorrow you were well?” I did it because I know it helps put a human face on this disease. In a positive way, it shows policy-makers that we’re just ordinary people, and it lets them know that ME/CFS prevents us from doing things that healthy people take for granted. It’s designed to tug at their heartstrings, much the way the poster child did for polio.

But I find that answering that question takes a toll on me. It leaves me sad.

In the years I’ve been sick, I’ve learned not to dwell too much on the past, or to think too much about the future. I find it easier to maintain a positive outlook when I take each day as it arrives.

To ask “What would you do if tomorrow you were well?” is really rather cruel. It asks us to revisit the life we imagined we’d have, the life that this disease prevents. It reminds us of the dreams and plans we had, which we’ve had to abandon.

I feel the same deep sadness sometimes when I get a chance to visit my former life for a time. If I’m having a good day and manage to do something I used to enjoy, I find that the pleasure I have in doing it is mixed with sadness. Even something like watching travel programs or cooking shows or home improvement shows, which I used to enjoy, aren’t really enjoyable when I know I can’t actually do those things. Or visiting with an old friend, remembering the things we used to do together and the things we planned, which they now do without me.

I’m generally a cheerful person. And I work at staying that way. I find things to enjoy in my life as it is, here and now, even if they’re small things, like the way the light shines through the leaves, or how my cat bosses me around. I like to think that what my life lacks in breadth, I make up for by noticing details that give it depth.

But every time I’m asked to think about “What if…”, what if things were different, what if I were well, it makes me focus on what’s lacking, instead of what I have. And it leaves me sad for a few days, until I can forget about those dreams and expectations I had, and get back to cultivating gratitude for all that I have.

I’ll probably continue to answer the question when I think it will do some good. But I wonder if the people asking the question know the cost of answer it.

SEID THEY SAID – HOW DO WE PRONOUNCE IT THIS TIME?

CFIDS, CFS, ME – all names for the same thing they can’t figure out. Changing the name is like when the school districts keep changing the annual test they measure performance by: there is no way of keeping score, and all kinds of deficiencies get swept under the rug, because one year cannot be compared to another. They like it that way. It keeps them from having to be accountable. Yuppie flu. Chronic Mono. XXXXX

WHY?

Now maybe someone could please look at WHY we can’t tolerate much exertion? What do we lack that normal people have, or have that they don’t? What is it that interferes with the body’s normal energy production mechanisms, or possibly the debris of such mechanisms which accumulates?

I take a half-hour nap within every 3-hour period. I call it ‘mental dialysis’ because if I’m quiet, and in the dark, and horizontal, something clears out of my brain better while resting. I use megadoses of B1 because it seems to replace something needed for an energy pathway in cells that can’t process uptake of B1*. It’s taken me 25 years to find even this little bit which allows me to function a little bit. And write a bit.

DO SOMETHING INSTEAD OF JUST CHANGING THE WORDS

The medical profession just keep changing names. No accountability. NO cure.

No wonder I have to write a novel about it. The ‘real’ people do nothing.

The title of this post is a truism: you can’t write without your brain working in creative mode.

What do you do when your brain won’t turn on?

For me, ‘creative mode’ requires an alignment of planets. There is a mental component to it – fear, or not wanting to write today, or any one of a million distractions or responsibilities – but the main component is physical: I have CFS, my brain doesn’t work very well a large part of the time (we call it ‘brain fog’), I can’t think analytically, and I can’t make decisions.

History repeats itself

I have blogged about these little problems in the past. I’ve had them – and their cousins (the ‘dog collar’ of swollen lymph nodes, mild fevers, a fair amount of a weird pain, and a long list you don’t even want to hear about) for 24 years.

In some sense you get used to it – you don’t have a choice, and spending time with a bad attitude helps nothing, improves nothing, and wastes your remaining good time. Continue reading →

Getting too near the end of a story

You think you have it all down – the writing is going well, there are only a few more chapters to write/polish/revise – and you come to a standstill.

This time it’s not because the ending isn’t right, or because I can’t do this, but because I now have readers – and I’m afraid they won’t like the ending of this part of the story!

Or is it because I know the ending, and I know how much work there is to getting into Book 2, and I’m afraid of it?

The right end to a story – no holding back

It doesn’t matter: an ending HAS to be right, or it’s no ending at all. Pride’s Children was plotted out as a single volume – it has just grown in the telling because its premise is tough, and the harder the premise is to prove, the more words you will need to justify your ultimate ending. Donald Maass talks about this in Chapter 6 of The Fire in Fiction – Making the impossible real:

“The premise underlying … is going to be a hard one to swallow… [it takes] three hundred pages [of setup.]” Continue reading →

This is an update of myexperiment with taking vitamin B1 to improve some of the symptoms of fatigue, brain fog, and pain that goes along with my CFS (ME). I promised to report, and I will do these updates until I’m so stable it’s boring, or I decide it isn’t working and stop taking it.

Something odd has happened. I got a lot worse again, and was wondering whether B1 was working, and what was going on. I figured SOMETHING out, and it may be significant, so I’m going to report on it for now – and update as I find out more. Continue reading →

The problem with many experiments, especially for people with diseases like mine (CFS), is that you never hear what happened after an initial favorable report, and so are left wondering.

This is similar to what happens to news reports: initial enthusiasm over something interesting, followed by… Nothing!

***CAUTION: I have no medical training – take everything you read here as MY experience, and, if you are interested in trying B1, do your own research, consult your own medical people, read widely, and make your own decisions.***

As I appear to be one of the people with CFS (PWCs) who is BENEFITING from taking megadoses of vitamin B1, and the changes have been significant for me, and are still continuing, I am committing to reporting every couple of months until people get bored, I get completely well, or it stops working for me.

Many people appear to have good results – but I’m a writer and have a blog. I can’t stop myself from pouring details out in 1000-word chunks and sending them out into cyberspace.

I’d also like to hear other people’s results – and I dearly wish there were someplace medical we could all accumulate our anecdotal results and experience.

This is a long post because I want to be able to refer to it, so I put everything into it that I thought might be relevant.

I’m going to try something I’ve been thinking of for a couple of years: to write the Sunday sermon I wish I’d heard.

Caveats: I know no more about theology than I do about medicine: I’m an interested, reasonably well-educated non-specialist layperson.

My opinions are my own, puzzled out and pieced together over many years of cogitating about the eternal questions: why are we here? where do we go when we are no longer here? what does it mean to be a good person? or to do the best you can? and even who is okay and who isn’t? If you can’t read what I write in this spirit, peace be with you and farewell. Continue reading →

One of the things getting in the way of getting on with editing Pride’s Children, the WIP, is an insidious little voice in my head saying, “That could never happen!”

My brain tells me I shouldn’t write the story of someone who gets something in the story she would never get in real life – and that it would discourage people with similar problems from even thinking about what happens in the book – lest it give them FALSE HOPES.

And then I remembered that’s why humans tell stories.

In stories, the ugly duckling turns out to be the swan, more beautiful than all those picking at him. And Cinderella, the girl whose stepmother and stepsisters treat her like a servant, marries the Prince.

The point is – if we don’t tell stories and read stories – all we have is reality. Reality is harsh. If it were not for stories, humans would all die early by ‘failure to thrive.’

We need stories in which there is hope. That it may be temporarily false is not important. If we mature, we will grow up to discover our own place, our own story, our own Prince – our own way to be happy. Either we will become President – or we will decide it is too much work to be President, anyway.

Children – and I think most people can remember being different, wanting more than they had, wishing they were more popular, or their parents had more money (so they could have that pony my eldest still asks for – at 26) – don’t have the tools to create their own reality where they are happy. Stories teach them (and adults who are still struggling with the same questions) those tools, or at least, that there ARE tools.

My story, if I am successful in my aims, will let someone spend a bit of time thinking ‘this could be me, this COULD happen,’ and thus keep that someone happy enough to keep trying for another day.